Lyme Disease – 3 Things Most People Don’t Understand

  There are great articles being written every day, such as this one or this one.

  However, there are a few key pieces of information I have learned through reading articles that don’t appear to be common knowledge, and may benefit those searching for answers. 

Diagnosis

  In North America, especially in the West, medical doctors are taught that Lyme disease is very rare, and essentially doesn’t occur here.  Thus as with female heart attack symptoms, because they lack the knowledge and experience, even doctors can fail to recognize or diagnose it.  However, over time, Lyme disease has spread from ground zero, the northeast of the U.S.  As well, in this day and age, many people travel.  Thus it behooves us to be able to recognize and treat diseases that may occur elsewhere.

  One of the main symptoms doctors and people are told to look for is a bull’s eye rash.  However, as with this study of 1770 children, the majority of people who contract Lyme may not remember being bitten by a tick, nor recall having had a rash.  Hence, the absence of the rash or memory of a tick bite should not be heavily relied upon when ruling Lyme disease out of a patient’s potential diagnosis in a clinical assessment.

  Blood tests can also be used for diagnosis.  However, when a blood test is performed to check for Lyme disease, in North America this will typically test against only one of the species of the Borrelia bacteria that causes Lyme, Borrelia burgdorferi.  But there are actually several more types than that.  Recently, more labs are offering the full suite of blood testing – for example Armin lab in Germany, or MD lab in the United States, but this costs quite a bit of money.

  One of the gold standard blood tests is the Western blot, which looks at a body’s immune response to Borrelia.  This test faces several criticisms, even with the new criteria from the Centre for Disease Control (CDC), such as a Positive/Negative diagnosis threshold being based on the responses of only ~225 subjects.  There are also concerns around the specificity of the bands included in the criteria, and the underlying assumptions that all people’s immune systems will mount a measurable immune response when exposed to the bacteria, and that all strains will provoke similar immune responses in all people.

  Aside from the above, a major problem with the Western blot blood diagnostic method is that a “Negative” result may still contain useful information, which typically isn’t relayed to the patient.  A relatively healthy person’s immune system may be able to clear the Borrelia infection, as it would other bacteria, on its own.  However, because Lyme disease can leave symptoms long after the source bacteria has been eradicated, one still needs to know if there was a past infection, especially if experiencing symptoms in the present consistent with Lyme disease, or Post-treatment Lyme disease (see section “Treatment of Lyme Aftermath” below).  Thus being able to see the specific bands and concentrations of a Western blot test can be more informative than the simple Positive/Negative reported.  This is likewise useful for those who wish to definitively rule out exposure to Lyme as the source of their symptoms.

  In conclusion, diagnosis of Lyme disease can be difficult, with even the current gold standard methods falling short in several ways.  With the increased focus on the issue of growing numbers of Lyme disease cases, more research dollars are going into new and improved Lyme research, including diagnostics.  For example, there are new methods being developed to concentrate the small proteins shed in saliva/urine in order to be able to catch Borrelia infections.  Brain imaging has also proven to be a useful, although not yet common, diagnostic tool – PET scans as well as SPECT imaging.  More alternate methods are outlined in articles here, and here.

 Treatment

  There is currently a lack of consensus in the medical community on the topic of treatment protocol for Lyme disease.  High doses of antibiotics to kill the bacteria are certainly agreed upon, but Borrelia bacteria are extremely well adapted, so this is not enough by itself.  This study contains evidence for a wide range of responses to Lyme treatment (and non-treatment controls), from getting better on one’s own, to incredibly antibiotic resistant antibiotic-resistant persistent infection.  It may be that the strength of the patient’s immune system is a key factor.

  Ticks have been around (in the fossil record) since before the dinosaurs, and Borrelia for millions of years.  In an adverse environment (i.e. when taking antibiotics), the Lyme-causing bacteria will go into a dormant persistor (cystic or “round body”) state, protecting itself with a shell-like biofilm not easily penetrated by antibiotics.  Thus patients need to take something at the same time, that will allow the antibiotics to penetrate any protective biofilm.  One example is Lactoferrin, a component of mother’s milk that disrupts the barrier via a mechanism known as quorum sensing.

  Lastly, there is some evidence that Lyme disease can be sexually transmitted, or passed to children.  Given that Borrelia is in the same family as Syphilis , perhaps this shouldn’t be surprising.  Until the science is conclusive, these vectors of spreading and re-infection of the disease should be considered a risk during treatment.

Treatment of Lyme Aftermath – Sequelae

  Lyme disease, even once eradicated, leaves in its wake damage to the body that will persist if left untreated.  These are known as sequelae, and can cover a broad range of symptoms, such as arthritis and other auto-immune type symptoms, to cognitive and neurological issues as a result of brain swelling and loss of blood flow to the brain.

  Lyme disease effectively hacks the immune system, preventing long term immunological memory from forming, leading the body’s defence system to favor short lived antibody producing cells that die off quickly unless there’s bacteria present, and causing changes in gene expression in white blood cells.  Meanwhile, Borrelia can vary its surface proteins/antigens to evade these immune cells which will now no longer remember them due to the bio-hacking.

  Two medications which have been prescribed for this purpose are low dose Naltrexone and Modafinil.  Though slow-acting (months timescale), Naltrexone is thought to reset the immune system via getting the body to increase its production of endorphins which up regulates the immune system.  Additionally, this balances cytokines, which are linked to inflammation, thereby reducing swelling.  Modafinil, a cognitive enhancement medication, can improve mental function (its mechanism isn’t as yet well understood).  As with the antibiotics, there are adverse side effects, but for a Lyme disease patient, the pros may outweigh the cons.

  And if at the end of this treatment, a person is still feeling unwell, continue to explore coinfections and other diseases, such as lack of B12, degeneration of the neurons’ myelin sheath, cancer, and so on.  Ideally in parallel so as not to miss anything critical.

Summary

  There are 3 main things people seem to miss when discussing Lyme in the media:

1. The typical Lyme diagnostic test checks against one strain of the Borrelia bacteria, rather than all of them, and may not be as accurate as portrayed
2. When treating for Lyme disease, one should take a biofilm inhibitor at the same time, since Borrelia bacteria can hide from antibiotics in a dormant state
3. A negative test can still be informative if there is clear evidence for a past infection, because even if one’s body has cleared the infection on its own, there are still aftereffects that need to and can be dealt with

Further Thoughts

  For many people, the burden of figuring out what ails them may fall on their own shoulders.  With technology and the internet, this becomes easier, such as in the case of Ian Stedman, who self-diagnosed his family’s rare genetic condition which had stumped doctors, and Crowdmed , where patients can harness the medical crowd’s collective wisdom.

  There are vaccines for pets for Lyme disease, and at one time vaccines for Lyme disease for humans were available too: PMC ImuLyme and GSK LYMErix.  Approved by the FDA in 1998 based on studies of ~10,000 people, they were taken off the market after a short time due to lack of commercial viability, namely a less than 80% success rate for preventing Lyme, covering one bacterial strain only, and had to be taken each year.  It may be that an improved version is on the horizon, although that won’t help current sufferers.

  It’s clear that as humans, with fewer human cells in our bodies than bacteria, viruses, and other microorganisms, we are in fact planets ourselves, hosting species whose interactions we are only beginning to understand.  Our health depends on learning these connections and how to harness them for our benefit.  Lyme disease highlights one knowledge gap, but there are likely other Lymes lurking out there, such as Toxoplasmosis.  Let’s keep the research going and ensure that we aid our doctors by knowing as much about the emerging research as possible.

  If you have any insights to the above, additional information or possible corrections, please comment!

Disclaimer:   I am not a medical doctor, the statements above are opinions, substantiated with supporting facts and evidence where I have inserted links.  I have not received any kind of compensation for writing this article or linking to the webpages above.